Observed consensus on research priorities for the hypertriglyceridemia patient registry

Figures & data

Figure 1. Data saturation. The percentage of unique items from participants is represented by the bars, and in the order that they joined the study, with the x-axis representing both the participant number and the number of participants required for data saturation as represented by the cumulative percentage of unique items. The y-axis presents a continuous scale for percentages from which the % uniqueness and the cumulative percentage can be derived.

Table 1. Awareness and consensus scores for research questions.

Item	Statement	A	C
Item 1	What are the predictors of hypertriglyceridemia severity?	3	2
Item 2	What are the impacts of BMI on hypertriglyceridemia?	4	1
Item 3	What genetic (and related omics) factors predict hypertriglyceridemia?	3	2
Item 4	What are the predictors of acute pancreatitis?	3	1
Item 5	What is the triglyceride level of a patient within 24 h of the onset of the disease that can be considered the cause of acute pancreatitis?	3	1
Item 6	What is the impact of alcohol intake and fatty liver on hypertriglyceridemia-induced pancreatitis?	3	1
Item 8	What demographic characteristics predict the risk of hypertriglyceridemia-induced pancreatitis?	2	2
Item 9	What other co-morbidities correlate with the development of hypertriglyceridemia-induced pancreatitis?	2	1
Item 10	What other co-morbidities correlate with the recurrence of hypertriglyceridemia-induced pancreatitis?	3	1
Item 11	What are the diagnostic conditions of hypertriglyceride-induced pancreatitis?	1	1
Item 12	What is the rate of relapse of hypertriglyceride-induced pancreatitis?	3	1
Item 13	What is the incidence and frequency of hypertriglyceride-induced pancreatitis?	3	1
Item 14	Which symptoms are correlated with Hypertriglyceride-induced Pancreatitis?	2	1
Item 15	What level of triglyceride is necessary to trigger a recurrence of Hypertriglyceride-induced Acute Pancreatitis?	3	1
Item 16	Is a family history of HT or pancreatitis associated with Hypertriglyceride-induced Pancreatitis?	4	2
Item 17	Does insulin drip result in a shorter hospital stay?	3	1
Item 18	Does insulin drip result in a shorter ICU stay?	4	1
Item 19	What should be the target Triglyceride levels at hospital discharge?	3	1
Item 20	When should Plasma Exchange therapy be used in hypertriglyceridemia treatment after hospital admission?	3	1
Item 21	Are hypertriglyceride-lowering treatments associated with better outcomes when used early in the course of the disease, and which drugs in particular?	3	2
Item 22	Does the rapid normalization of TG levels improve outcomes among patients with Hypertriglyceride-induced Pancreatitis?	4	2
Item 23	How should hypertriglyceride-induced pancreatitis due to pregnancy be managed?	3	1
Item 24	How should hypertriglyceride-induced pancreatitis and recurrent hypertriglyceride-induced pancreatitis be managed?	3	1
Item 25	What factors predict the recurrence of hypertriglyceridemia-induced pancreatitis?	4	1
Item 26	What is the relative progression of hypertriglyceridemia-induced pancreatitis to chronic pancreatitis?	3	1
Item 27	How safe and efficacious is a new medication for treating Hypertriglyceridemia-induced pancreatitis?	4	2
Item 28	How do medication and treatments affect the incidence of Hypertriglyceridemia-induced pancreatitis over time?	3	1
Item 29	What is the impact of Hypertriglyceridemia-induced pancreatitis on patients’ quality of life?	3	1
Item 32	What patient-reported outcomes are most important to hypertriglyceridemia patients and their families?	3	2
Item 33	What factors influence ongoing or persistent pain post-treatment of Hypertriglyceride-induced Pancreatitis?	4	2
Item 34	What is the risk of developing exocrine insufficiency or Diabetes after an episode of Hypertriglyceride-induced Pancreatitis?	4	1
Item 38	Has death occurred during the course of treatment?	4	1

Where Awareness scores are calculated presented as: (1) 100% complete awareness, (2) >50%–<100% awareness, (3) > [f/f_min x 100] and ≤50%, (4) f/f_min x 100, (5) 0% awareness, and Consensus scores are presented as: (1) 100% , (2) >50%–<100% , (3) >0–<50%, (4) 0%.

Definitions: f is defined as the frequency of item reported by participants in their responses to Round 1 question and f_min, the number of times the least frequently mention item was mentioned in the response to the Round 1 question.

Table 2. Categorical research questions attaining consensus in survey 2 (CR2).

Category	Research questions
Hypertriglyceridemia	What are the predictors of hypertriglyceridemia severity?
	What are the impacts of BMI on hypertriglyceridemia?
	What genetic factors predict hypertriglyceridemia?
Acute Pancreatitis	What are the predictors of acute pancreatitis?
	What is the triglyceride level of a patient within 24 h of the onset of the disease that can be considered the cause of Acute Pancreatitis?
Hypertriglyceride-Induced Pancreatitis	What is the impact of fatty Liver on hypertriglyceridemia-induced pancreatitis?
	Is there a correlation between chronic abdominal pain and the risk of hypertriglyceridemia-induced pancreatitis?
	What demographic characteristics predict the risk of hypertriglyceridemia-induced pancreatitis?
	What other co-morbidities correlate with the development of hypertriglyceridemia-induced pancreatitis?
	What other co-morbidities correlate with the recurrence of hypertriglyceridemia-induced pancreatitis?
	What are the diagnostic conditions of Hypertriglyceride-Induced Pancreatitis?
	What is the rate of relapse of Hypertriglyceride-Induced Pancreatitis?
	Does insulin drip result in a shorter hospital stay?
Disease Management	Does insulin drip result in a shorter ICU stay?
	What should be the target Triglyceride levels at hospital discharge?
	When should Plasma Exchange therapy be used in hypertriglyceridemia treatment after hospital admission?
Chronic Pancreatitis	What factors predict the recurrence of hypertriglyceridemia-induced pancreatitis?
Real-World Evidence	How safe and efficacious is a new medication for treating Hypertriglyceridemia-induced pancreatitis?
	How does medication affect the incidence of Hypertriglyceridemia-induced pancreatitis over time?
	What is the impact of Hypertriglyceridemia-induced pancreatitis on patients’ quality of life?
	Is Traditional Chinese Medicine effective in managing Hypertriglyceridemia-induced pancreatitis?
	What medical therapy is associated with the lowest risk of pancreatitis?
	What patient-reported outcomes are most important to hypertriglyceridemia patients and their families?

Data availability statement

The data that support the findings of this study are available from the corresponding author, R Jandhyala, upon reasonable request.